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She has been on Seroquel, and then Olawin to ease psychosis over 12 years, but now these medications don't seem to settle her. Sessions with the psychiatrist leave me more confused than ever? How do I stay positive and keep my sister who is very disruptive to the other minimally intellectually challenged residents of the small group home where she has been for 3 years? I would be so grateful to hear from anyone who is caring for an aging Down's sibling. We live in South Africa.

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Poor love-bun!

Her loss of interest and her getting so upset must be heartbreaking.

Surely it's for the support workers at the home to explain to the other residents that your sister isn't well, and everyone will need to help her a bit more just for now?

I hope the next assessment brings some clarity and a way forward. Please let us know how you're getting on.
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Thank you for your concerned and helpful responses. We realize that so little is known currently on aging DS after 50. We are getting a new psychiatric assessment locally, from their we will have to make the decision on whether a higher level of care home is needed. She has a small craft outlet, but there's no longer any enthusiasm or consistency in her output. She used to be a very sociable and outgoing person, but that has faded too. No agression but refuses to do any small chores in the group home, and the stubbornness upsets the other residents. My sister is the only DS resident there.
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Ahmijoy Oct 3, 2018
Maybe it’s the way they ask her to do things? With Donna, she loved to help but not do things by herself. We’d fold laundry together, wash dishes together, plant flowers together...but if she was asked to do something on her own, she just wouldn’t. And, here in Ohio we have group homes for people with mental challenges. There’s one close by that's just for people with Down’s.
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I suppose you already know that people with Downs have a higher risk of developing Alzheimer's, her sundowning behaviour makes me think she is most likely affected. Unfortunately research into this population is limited but this article from eMedicineHealth mentions that there may be a benefit from some ALZ medications:

emedicinehealth.com/alzheimers_disease_in__down_syndrome/article_em.htm#facts_on_alzheimers_disease_in_those_with_down_syndrome
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With my sister-in-law, who could be very emotional, we found that giving her something to do—some purpose in life—helped a lot. She took very good care of her aging parents while they were at home. They tended to baby her well into her thirties, but she always proudly told me she had folded laundry or done dishes or made beds.

Maybe this would help your sister? Can they give her small tasks at the Care Home? They would have to praise her profusely, but it would give her a sense of purpose.
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I had a family living down the street growing up, who had a DS daughter my age. Back then they didn't do much for these people. She lived with Mom all her life. In her last years, Dementia set in. As she aged she got more aggressive. Part of the Dementia. Maybe she is ready for a med change or like said, a higher level of care.

Sorry you are dealing with this. I have found DS individuals are usually happy and loving. Its a shame they have to deal with challenges all their lives to end up, maybe but likely, Dementia in their later years.
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I don't know if this leaflet might be of help and/or interest? downsyndrome.org.za/docs/Aging%20and%20Down%20syndrome.pdf

It's from an organisation called Down Syndrome South Africa, and their website also has links to a range of resources.

I wish I could share ideas for how to help your sister and support her staying with her peers, but as she is already receiving full psychiatric input (and it's not helping) I wonder if it might be time to think about preparing her (and her friends and family) for change? It may be that looking ahead to plan the best options you can for her care as she becomes more disabled is less frightening and frustrating than trying to prop her up in an environment that just can't meet her needs any more.

Do you talk to the other residents' families? I would expect them to be sympathetic and supportive, at least in principle, and not least because they'll know these issues may be their own in future. Talking and listening to one other might help with perspective - just a thought.

I'm so sorry you're all going through this. Is your sister still able to enjoy other aspects of home life, when she isn't experiencing her 'sundowning' sessions?
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